She Fought to Be Here: Collins’ Story at Cincinnati Children’s

Why It Matters

Early genetic diagnosis enabled targeted, lifelong care, reducing future complications and showcasing the value of integrated pediatric specialty centers.

Key Takeaways

• Collins underwent eight surgeries, including removal of eight inches intestine.
• Genetic testing revealed Alagille syndrome, guiding long‑term care plan.
• Cincinnati Children’s coordinated multidisciplinary team identified organ complications early.
• Ongoing monitoring required for pulmonary artery narrowing and liver issues.
• Family credits hospital’s expertise for giving Collins a hopeful future.

Summary

The video tells the story of six‑year‑old Collins, a child who has faced multiple life‑threatening surgeries and was ultimately diagnosed with Alagille syndrome thanks to Cincinnati Children’s Hospital.

Collins has undergone eight surgeries in three years, including removal of eight inches of small intestine and heart procedures. Genetic testing, prompted by the hospital’s recommendation, identified a JAG1 gene mutation causing multi‑organ dysfunction, explaining her intestinal perforation, heart defects, and liver concerns.

Parents praise Dr. Keller and the multidisciplinary team, noting the hospital’s “dedication to excellence” and how the diagnosis allowed proactive monitoring of pulmonary artery narrowing and liver health. Collins’s own optimism—she proudly shows her heart scar—underscores the family’s resilience.

The case highlights the importance of early genetic screening in complex pediatric cases and illustrates how a coordinated care model can shape long‑term outcomes, ensuring patients like Collins receive lifelong specialized follow‑up.

Original Description

In this video, we explore a critical aspect of pediatric care, focusing on a young patient's unexpected medical journey. Our dedicated team of doctors and nursing staff at Cincinnati Children's provides exceptional care, addressing complex children's health challenges. Learn more about the medicine and support available for families facing similar situations.

Collins, nearly six, has endured eight surgeries in her first three years, including an unexpected operation that removed eight inches of her small intestine, leaving her family shocked and fearful. After extensive NICU testing and ongoing questions about a perforation and heart issues, specialists—including Dr. Keller connected to Cincinnati Children’s—recommended further genetic testing, which helped identify Alagille syndrome, a gene mutation affecting multiple organs such as the liver, kidneys, heart, and skin. Collins’ pulmonary arteries are narrower than normal, requiring regular follow-ups and lifelong care, with the liver now the main concern. Despite her medical challenges, she remains an optimistic “princess warrior,” proud of her heart scar and determined to keep going. Her family credits Cincinnati Children’s expertise and team-based excellence with giving Collins the best chance and a hopeful future.

00:00 Surgery Shock

00:37 Meet Collins

00:59 Searching for Answers

01:23 Alagille Diagnosis

02:07 Living With Heart Care

02:39 Owning Her Journey

03:23 Why Cincinnati Children’s

03:50 Day by Day Gratitude

04:14 Closing Words

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